Think it's back again

[Hunterj5]

Been dealing with this since last March. Multiple courses of vanco and dificid. Finally had an FMT in January. Felt off and on since then but always tested negative. Ended up taking another course of dificid the on call GI called in for me last month due to bad diarrhea. Got so bad I started the meds before the dr called back with test results bc they took 4 days to call me back!

Felt great while on the dificid even though the test did come back negative. How's that work??? Finished it 2 weeks ago and have felt bad since. Woke up last night with backache and cramps. Had multiple BMs from last night now now. They are getting progressively looser. Back hurts. Stomach hurts. Dr says to wait a couple days before testing, but this is the worst I've felt since before the FMT. Very loose BMs and bad pain. I don't think I'll ever get better. It's been almost a year and a half, and I've lost 30 pounds.

I'm only 29 and this is the only major illness I've ever had. I drink kefir and take florastor every day. Nothing makes me better.

[ResearchGrandma]

I can understand your concerns because I have often thought that C. diff was back when it was not because our GI systems either never return to normal or are very slow to return to normal after C. diff. I am not the only one who has become totally unable to tolerate any dairy, even though I used to eat a lot of cottage cheese and plain yogurt every day prior to C. diff. Perhaps you might eliminate the kefir and see if that helps.

[Hunterj5]

The kefir actually helps me. It's essentially lactose free. I also eat Fage Greek yogurt every morning and i think it helps too. If I eat ice cream it tears me up though. Cheese doesn't seem to do much.

This episode is really concerning to me because I truly feel worse than I have since before the fMT. Back and abdomn pains are terrible. I just did a home enema fmt using my wife (have done multiple times). Already feel much better, but it never lasts more than a week or so. Think I'm going to try doing it every day for a week and then once a week thereafter. That regimen seems to have helped lots of people, whether it's c diff or ibs. My Dr has given his blessing to do these home treatments.

[beth22]

I do those home FMT enemas and they help me too, but I also have SIBO and it can cause weight loss, D, etc. Have you been tested for that? The enemas won't help it because it is an overgrowth of bacteria in the small intestine. I don't think Dificid helps it either. Vanco made it worse or caused it to begin with in me. If your symptoms don't improve after the enemas, ask your doctor about SIBO and maybe get the breath test for it to see if you have it. I don't tolerate dairy either. You might try and stop the yogurt for a day or two and see if it makes a difference. Florastor gives me a lot of gas and D, but if you have been taking it with no problem, then it is probably not that.

[Hunterj5]

To be honest, my Dr has kind of written me off as having Pi-ibs and isn't real open to doing anything else. He's a nice guy, but I don't think he knows a whole lot about c diff, or particularly cares to. I have an appt scheduled with a new GI but it isn't until August. I've heard good things about him, so I'm hopeful things will look up. I think I just need a fresh set of eyes on my case. I felt great while taking dificid, and that puzzles me since I was supposedly negative the whole time?

[beth22]

Antibiotics can help temporarily. I used to feel better at first with them too, and then off of them had terrible IBS type symptoms. SIBO is a type of IBS and you usually get it after another infection of the GI tract, whether it is bacterial or viral. Maybe your new GI knows more about it. It causes food intolerances and malabsorption, weight loss, D or C and a lot of gas. A simple breath test can detect it. After my FMT, I felt really bad with IBS symptoms and had every test there is I think - fecal fat, MRI, ultrasound, etc and the only thing that showed up was a very highly positive lactulose breath test. Now I get elevated pancreatic enzymes sometimes that can cause me symptoms. August is just around the corner. Write down all of your concerns as they come up so you can tell the new doctor. I find that I forget by the time I get to my appointments unless I do that.

[ResearchGrandma]

I wish I could still tolerate Kefir or yogurt, because I love the taste. Last winter I tried 1/4 teaspoon 1st day, 1/2 teaspoon the 2nd day (used a measuring spoon) of lactose-free plain yogurt. The 1/4 teaspoon resulted in some gas and an extra BM, but the 1/2 teaspoon the next day resulted in 3 days of feeling sick. Since it was a lactose-free yogurt something other than lactose was bothering me. That was my last trial of dairy. I use almond milk with cereals, and can tolerate coconut or soy yogurt, but don't particularly like them, since they all have added sugar. I like my yogurt unsweetened. The O Soy company is supposed to start producing a no-sugar added plain soy yogurt, but this has been on their website since the spring and who knows if we will ever see it in stores.

[beth22]

Researchgrandma - You might be intolerant to the milk protein, not the milk sugar. I haven't tried yogurt I years because, like you, I spent the afternoon in the bathroom, but I had 3 teaspoons and it was not lactose free. I may get up the courage to try again. I bought some kefir and thought I would try that first.

[richlin]

Hunter. One thing I noticed is that those (including myself) who have done DIY FMT at home using an unscreened donor seem to end up in a worse recovery state. Even tho I've done FMT in the hospital when I used a donor who "seemed" healthy I can't get rid of the 4-5x bowel movements a day, yellow loose stools, gurgling, farting and overall bad feeling in the gut.

It could be that we either picked up an undetectable pathogen or a parasite that is causing issues. It's unfortunate, but if I would've known that my DIY FMT for my IBS was going to led me down this route I might've held off until I got all my ducks in an order.

[Lisa33]

Richlin - This is an old post, so not even sure if the original poster, Hunter is still on here. Please note dates of posts before replying. PM may be a better option if you really want to reach out to an old poster.